Person-centred care is about considering and then doing things that ensure the person requiring care is treated as an equal individual in the planning, developing and execution of the care they are to receive.
The individual, their families and loved ones should be at the centre of care decisions, working in conjunction with professionals to deliver the best care possible.
Historically, people were encouraged to adopt routines and processes that healthcare professionals felt were most appropriate or convenient to them. Person-centred care is about considering things from an individual’s perspective and, wherever possible, integrating their wishes and preferences within the care that is delivered.
For person-centred care to work, providers need to work with individuals, their families and loved ones to determine the most appropriate way to provide care that best suits the needs and wishes of the individual themselves. This collaboration is key if care is to be delivered in a compassionate and appropriate manner.
As a widely-regarded best practice method, person-centred care brings with it many benefits. Not only can the general quality of care be improved compared to more traditional schedule-based practices, but individuals may retain independence for longer, the necessity of moving into residential care may be delayed and, most importantly, a person’s quality of life may improve.
The trouble with person-centred care
This all sounds great, however, there is one key issue – how can care providers understand someone’s wishes and preferences if the individual concerned doesn’t have capacity to communicate for themselves? This is the challenge faced by an increasing number of providers caring for people with conditions such as dementia (or in fact any condition that results in reduced capacity) that may require care either now or at some point in the future.
We are creatures of habit; we feel most comfortable in our home environment, we thrive on familiarity and many of us are wary of change, and this can be magnified for an individual who is living with a cognitive impairment. Our personal preferences regarding the type of food we eat, the television we watch or how we interact with other people, and how these habits change over time, make us unique.
This uniqueness is something we should all be able to carry with us throughout our lifetime, including any time spent being cared for. We need to acknowledge that, whether through personal choice, a change in circumstances or a medical condition, a preference today may not be the same as five years ago and it may differ again in five years’ time. This may not be an issue if someone is able to communicate a change in preference themselves, but what if they have lost the ability to communicate?
It is a reality that as we live longer, we are all likely to require care at some point in our lives. If someone loses the ability to communicate for themselves, then it falls to family members, loved ones and healthcare professionals to build a narrative of that person’s life through discussions.
In many cases, it is the information gathered from these consultations from which a care plan will be developed. How well do this group of individuals know every important aspect of that person’s life? Some may not have lived with the person for many years, or have only known them for a relatively short period of time, therefore much of the information that goes into the care plan could be guesswork at best. Throw into the mix that this is already likely to be an emotionally challenging time for everyone involved and your chances of building a meaningful, person-centred care plan are limited.
A new direction
The Care Quality Commission (CQC) and National Institute for Health and Care Excellence (NICE) have rightly thrown a spotlight on the need for care providers to design and deliver person-centred care. Luckily the majority of providers acknowledge these important directives and are looking at ways to effect change.
Preparing4Care is not alone in recognising that the person best placed to provide information about their likes, wishes and preferences is the individual themselves. In fact, a number of care providers Preparing4Care has spoken to have commented how they wished they could have had conversations with the person entering their care five years previously.
Preparing4Care has therefore launched a free online service to ensure a person’s voice is always heard. Over 4,500 people have subscribed to the service since its October 2019 launch. The idea behind this service is that anyone can create a bank of information about themselves while they are still able to do so, which can later be accessed by family and professionals.
A Personal Reference Guide is completed by the individual, who answers a series of questions about key areas of their life, including their family, environment, food and drink preferences and leisure activities. The Personal Reference Guide is made up of 23 different sections, with around 10 questions per section. It intentionally goes into a lot of detail, as it is this detail that will ensure appropriate, tailored care can be designed and delivered.
The guide is accessed via the Preparing4Care website; individuals register for a secure online account and answer the questions (on their own or with assistance from others) over whatever timescale is appropriate for them. Once completed, the Personal Reference Guide forms an encyclopaedia of that individual, ensuring their voice is always heard. Answers may be added to at any time (but not amended) if someone’s wishes and preferences change.
Access to the Personal Reference Guide is then granted to a family member or loved one who can, when required, grant further access to a care provider. Those who have been granted access are also able to add (but not change) responses within the guide to ensure the information contained is reflective of any important changes.
Making a difference
The information contained within the Personal Reference Guide can be used to develop person-centred care plans and ensures that individuals requiring care are themselves involved in every step of the process.
However, it is not just the individual and their families who can benefit from the service.
Those delivering care will also see positive outcomes. Staff will be able to forge closer connections with individuals, there should be less confrontation and the working environment should be a more enjoyable and relaxed place to work. Staff morale should improve which could have a positive impact on retention rates and employee referrals.
An individual’s environment can be adjusted to ensure their preferences are met, for example, if someone prefers not to have a television in their room, this request can be accommodated even before they arrive.
It may also be important to understand what jobs or hobbies someone has undertaken in the past, as an individual may display behaviours relating to these past experiences which would be important to understand; providers can then determine if appropriate adjustments to care need to be made. Food and drink provision can also be provided based on an individual’s preferences and tastes which could lead to a reduction in waste and agitation.
Equally, if an individual’s eating or drinking habits were to change (which could have an impact on someone’s health) the Personal Reference Guide can be accessed to determine if adjustments need to be made to ensure an individual’s preferences are being met or to determine if certain food and drink types have resulted in changes in the past.
Patient assessments can be undertaken in the knowledge that the wishes of the individual are understood and acted upon, easing the burden on families, loved ones and healthcare professionals and making the process less stressful for everyone concerned.
Preparing4Care is designed and funded through a partnership between Training2Care (UK) Ltd, which operates the Virtual Dementia Tour and the Autism Reality Experience, and Community Integrated Care.
What are you doing to ensure people lacking capacity get a say in their care? How do you ensure people are supported in the ways they want to be? Share your tips and feed-back on this article below.